Is Severe Withdrawal Rare?

[alexjuice]

I'm curious of the forum's opinion on this question -- How common is severe withdrawal?

 

I often wonder about the rate of occurrence. Ultimately, I tend towards thinking that in most cases prolonged withdrawal must be uncommon, that is in the cases of antidepressant treatment alone.

 

In other cases, like mine and many others, where drugs were started fairly young and the patient exposed to a large number of drugs of varying types (including antipsychotics) I suspect perhaps that the withdrawal rate is much larger. Also I suspect most withdrawal cases are stealthful, misindentified as re-emergence of 'mental illness', that the withdrawal is averted by just neverending compliance. Take the population on the multi drug cocktails as a group. Many (most) are underemployed/unemployed and dependent on the welfare of the state, charities or their families to pay for their treatment. 85% of the risperdal Rx's in my state, for instance, were paid for by the state, not by private insurance or by the patients themselves. (This was true, until the state AG filed a suit with JNJ, subsequently settled and who knows how the system works currently.)

 

I think then that many 'seriously ill' patients, those like me, are viewed as hopeless cases by their prescribers; recovery not viewed as likely or even impossible, symptom-management drives the care. 'Hopeless patients' -- like me -- are not well-educated and their treatment plan is less responsive to complaints and side effects. Like anything in life, rational people put less work into hopeless causes. Truth is, nobody rearranged the deck chairs on the Titanic.

 

In effect, a large % of withdrawal cases are likely latent, never to occur. I suspect, based on much interaction with the medicated, that a majority of the highly medicated reach the point of no return and ride out the Drugs for as long as they live. I wonder what the w/d rates would be among this group?

 

So, to the orginal question, of patients taking just an antidepressant or who were functional on the medication (fully employed, etc), I am curious what % of these patients, who doctors do not see as 'lost causes', experience prolonged withdrawal of a significant magnitude.

 

Like I said, it must be somewhat small, right? I have yet to meet a doctor or psychiatrist who recognizes withdrawal's existence. Labeling this as denial or rationalization would be a mistake, IMO. Denial/rationalization appear when doctors have discussions with patients of serious side effects such as diabetes risk or sexual health. However, in those cases the denial is more of a minimization, the rationalization more of necessary evil. The doc's aren't outright combatitive against the existence of these side effect risks. Of course, they think the benefits of the medication outweigh those risks -- why wouldn't they given their biases and incentives.

 

I don't believe denial,etc can explain prolonged w.d ignorance. I know zero psychiatrists, well never met one in person, who is aware of the risks of long-term prolonged withdrawal, they don't argue with me that the risks are small or the benefit greater than the risk. They have no clue what I am talking about. To me this suggests serious w.d must happen fairly infrequently, certainly in under 5% of patients who discontinue.

 

Does the forum have an opinion? Is there research on the matter?

[Shanti]

I'm with you Alex. I've thought much about this in the same way too. This can't be purely ignorance, it must be that we're not that high of a percentage. Both my doctors have not seen this before, yet these meds are prescribed so much. ALL these doctors of ours can't be so willfully ignorant. Can they?

[GiaK]

I agree it's not common...but that fact is greatly confounded by the fact that it's not recognized when doctors see it either...so it's not totally rare either... ***SIGH***

 

it needs to be recognized and studied before we will really know anything with clarity.

[Jemima]

ALL these doctors of ours can't be so willfully ignorant. Can they?

 

Why not? Everything they know about drugs of whatever kind is spoon-fed to them by the drug companies, which have no compunctions at all about lying. Many, many doctors buy into the idea that a person who is experiencing hyperactivity after taking an AD was bipolar all along and and that the drug "unmasked" the condition. And then come more and more drugs to "cure" the side effects of the current drugs, and on and on until the person truly does appear to be psychotic from all the drug interactions. I thank God often that I got my AD from my PCP and that she took my word for it when I said the drug was making me hyperactive.

 

There is a great deal of ignorance in the medical field, and not just in psychiatry. Many "preventative" exams and tests are nothing but fishing expeditions, including the annual physical. If you have the time and interest, try reading The Last Well Person by Nortin M. Hadler, M.D. It's a really eye-opening book about how much of mainstream medicine actually makes people sicker.

[alexjuice]

It is complicated, I agree. Doctors would mistake w/d cases, true. And, Jemima, I agree it is unwise to ever dismiss ignorance when its so well compensated. Those points duly noted.

 

On the other hand, I have several friends who've taken psychiatric medication -- but not to the extent that I have -- and who no longer take psych meds. Even with them, former patients, I have stopped discussing my condition because they think it's in my head. It's worst with them actually because they have the attitude of, "I did it, it's not that tough."

 

Of them, all did deal with a w/d syndrome on discontinuation. But almost all, probably 5-10 friends and acquaintances in total, fully recovered after a tough period of acute suffering lasting days or weeks. One friend, on yet the other hand, may in fact be struggling with a prolonged w/d but he refuses to consider that possibility. Still one maybe and the rest all-better.

 

For example: the original reason I resisted switching from Lexapro to Effexor was recalling the frantic calls for support I got from my good friend K who spent three days crying in a bathtub after she cold-turkey stopped Effexor. After that she was back to work in a week and has been healthy, working for years. Is married now with children and doing well, last I facebook'd her.

 

Alex

[Shanti]

I see your points too Jemima. I also think that they do attribute the ones that react as we do to symptoms returning. My doctor told me all my symptoms were my schizophrenia. This is willful ignorance imo. Because I KNOW what my symptoms were like before the meds and I can certainly tell the difference. The doctors aren't listening to us, not believing us. Arrogance I think too. But yet like Alex, I too have friends that have come off of antidepressants without w/d syndrome. They also say I'm blowing it out of proportion.

[basildev]

I suspect perhaps that the withdrawal rate is much larger. Also I suspect most withdrawal cases are stealthful, misindentified as re-emergence of 'mental illness', that the withdrawal is averted by just neverending compliance.

 

Alex, I tend to agree with this. In my own case, I've continually gone back on the meds because the doctors said: 'well, once you've had 3 'relapses' you pretty much have to be on medication for the rest of your life.

 

Of course I didn't know at the time that what the doctor labelled 'relapse' was simply withdrawal. I would have kept on believing this for the rest of my life if I hadn't found this forum.

[Barbarannamated]

I think that the number of people who see out from under the drugs and system that reinforces use of drugs is quite small. A majority will continue for the rest of their lives and never realize that all of the medical problems they develop are a result of psych drugs. Therefore, few experience severe long term withdrawal problems. I think this is especially true of people who have been polydrugged for years.

 

This is not to minimize the distress of anyone discontinuing a single drug.

[Shanti]

Good point Barb. I think that is a big part of this issue. They mostly just stay on the drugs.

[GiaK]

the fact is most people who are critical of psychiatry don't recognize this either...that speaks to it not being a problem with a lot of people as well (what percent, I don't know)...I work extensively with people in critical psych circles both professionals and ex-patients and sadly we are denied there too. Why? Because a lot of those folks DID NOT HAVE these issues when they came off drugs and they generalize to everyone else.

 

If I didn't have access to communicating with such a huge population of folks who've come off drugs I might see things differently but the fact is I know many 100s of folks who had little significant withdrawal issues coming off all different classes of psych meds including ADs and benzos which seem to have the worst profiles though I've seen grave injury among those coming off neuroleptics and mood stabilizers too (again I'm not sure what I'm seeing here because the numbers of folks coming off mood-stabilizers and neuroleptics is so much lower) We don't have a comparative pool to look at. I know that a large part of my illness is lamictal induced but I simply don't have a large body of people to compare notes with as I do with the benzos and the ADS.

 

The picture is not at all clear.

 

Surely I've also met many people who didn't know what was wrong with them who have drugs to thank for their various chronic illness issues.

 

I wrote about this the other day on the blog: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up http://beyondmeds.com/2012/12/04/psychiatric-drug-withdrawal/

In the course of my work with those coming off psych meds I’ve learned that there are few people, even among critics of psychiatry that have a clue at the potential severity of psychiatric drug withdrawal syndromes. That also means there are virtually no professionals that can offer meaningful support when people encounter serious issues. We remain dependent on each other.

 

Other than those who’ve directly experienced protracted withdrawal or those who have lived with those who have experienced it, it simply remains under appreciated and therefore under treated and under recognized even, as I said, among critics of psychiatry. It’s rather horrifying for those of us who find ourselves struck by such illness. While perhaps a minority, we are not an insignificant minority. I alone have had contact with 1000s of us.

 

The other thing to consider is that we are perhaps not even a minority because the fact is so many issues with withdrawal are not recognized at all and are instead considered and then treated as the “underlying illness,” many folks simply get sicker and sicker on meds and never even know why they’re ill. Those people never come to understand that all the multiple trials of drugs and the numerous times of coming off and on them has actually been the cause of their illness.

 

I’m putting together a collection of withdrawal links for the navigation menu since the drop-down menu has become rather long. I will post it as a new post and then it will be accessible permanently from the top of the blog.

 

Generally, prolonged withdrawal syndrome is not recognized by medicine. You will find very few doctors to diagnose it and still fewer to treat it. This is a collection of links that might help you educate yourself so that you can find more appropriate care when the time comes as well as hopefully avoiding falling ill at all. I found that being well-educated and finding doctors who respected how much effort I put into educating myself helped me. It must be said, though, that it is also a curse because for every doctor who appreciates a knowledgable patient there are likely 15 or 20 or maybe even more who feel threatened by that same patient. Still, it is a plus to know what we are doing.

and I wrote it with my audience in mind...those who are critical of psych but really don't know WTF I'm talking about when I write about withdrawal syndrome...sadly too many people I know...even in the movement.

 

anyway everything brought up in this thread by all of us are legitimate concerns...what is hard to figure out is how much weight to apply to each specific factor because without systematic study it's hard to know what percentage of folks we're seeing...

 

if we're on these boards we see things in a particular way...and those surrounded by other particular populations also see things from that stance...people select in or out of populations too...if you aren't suffering greatly when you come off drugs you don't hang out on these boards and you don't learn about the devastation.

[Skyler]

I think we are all candidates for severe withdrawal if we are of a sufficient age, have been on the drugs long enough, have genes that predispose, or have a complicated psychiatric med/withdrawal history.. most times one of these factors is at work. The presence or absence determines when there will be withdrawal. Sigh.. not rocket science.

[starlitegirlx]

I think we are all candidates for severe withdrawal if we are of a sufficient age, have been on the drugs long enough, have genes that predispose, or have a complicated psychiatric med/withdrawal history.. most times one of these factors is at work. The presence or absence determines when there will be withdrawal. Sigh.. not rocket science.

 

This is what I think as well. I was diagnosed at 19 and went on and off imipramine, lithium, prozac with zero issues. I took some for around a year or a few years. Went off with zero issues. I think there were even periods back then when I wasn't taking anything at all. Around 24 severe situational depression and stress triggered prolonged depression that got quite severe due to several situational factors. I landed in the hospital suicidal and ended up doing the russian roulette with many of the newest meds back in the mid 90s. Finally settled on what I've been on for the past 16 years. So I think time on them is definitely a factor. When you think that our bodies change every 7 years then imagine what being on these meds for a prolonged period can do, it's easy to imagine why a lot of people don't seem to have these issues.

 

Of course, if the BS story that we need to take these meds for the rest of our lives was not perpetuated, I doubt most of us would be in this situation. At least I wouldn't. I would have gotten off them and only used them when needed. But a bipolar label gets you life on meds. For many years I remember putting my meds aside at night and having to force myself to take them as if there was something in me that knew not to keep taking them. But I was the good little patient and now look where it has gotten me. I wish I had been more defiant. Truly, I do.

[Jemima]

I think we are all candidates for severe withdrawal if we are of a sufficient age, have been on the drugs long enough, have genes that predispose, or have a complicated psychiatric med/withdrawal history.. most times one of these factors is at work. The presence or absence determines when there will be withdrawal. Sigh.. not rocket science.

 

I think your observations are right on, Schuyler. Once upon a time thirty-plus years ago I was put on Lithium for depression due to a divorce. It had absolutely no effect on me except to give me bags under my eyes and after a couple of months I tossed it with no after-effects. Then about ten years ago I went on Wellbutrin for about three months, because back then it was supposed to be this huge help with quitting smoking. It didn't help me a bit and I quit C/T (the Wellbutrin, that is) with no aftereffects.

 

However the last time around, when the depression was caused by Lipitor lowering my cholestrol into the danger zone, the ADs, first of all, took a very long time to have any effect (eight weeks for Pristiq), and the withdrawal was debilitating for months and is still going on (to much lesser extent) a year later.

 

So I do think that vulnerability has a lot to do with it, but at the same time I believe lots of people who suffer withdrawal are just drugged and drugged and drugged again until the diagnostic picture is so corrupted that only God knows what's going on.

[Barbarannamated]

I think we are all candidates for severe withdrawal if we are of a sufficient age, have been on the drugs long enough, have genes that predispose, or have a complicated psychiatric med/withdrawal history.. most times one of these factors is at work. The presence or absence determines when there will be withdrawal. Sigh.. not rocket science.

 

Yep. Good discussion.

 

In all honesty, I don't know if I'd classify my case as severe withdrawal or completely overwhelmed by how to reconstruct life.

 

Curious to hear about people who have lost years to disability and returned to occupational function and independence.

[dalsaan]

All good points raised so far and I agree with Gia's statement that we are a minority but not an insignificant minority

 

I had trouble with withdrawal right from the start. I was originally put on Effexor and if I missed a dose or was really late taking it I would get really nauseas. I had a bad reaction to Effexor in that it gave me really bad insomnia. I was ct'd off that to go onto remeron. Had really bad wd until the remeron kicked in

 

I have always had wd and it has been protracted since I have tried to get off the remeron

 

My drug history isn't that significant and I will never know how long my wd would have been when I initially stopped taking the Effexor. It was acute but would it have been protracted. I don't know

 

I tend to think that I am sensitive to this kind of medication given that kne missed dose of Effexor would reallyske me sick

 

I also think that it was the ct that triggered my experience of protracted withdrawal

 

So all up I think it's possible that even people without a poly drug history are at risk of protracted withdrawal if they ct. It's just less likely that they would have deliberately ct'd given they weren't changing drugs at any point

 

I'm not sleeping well at the moment so I hope this makes sense

[Skyler]

So I do think that vulnerability has a lot to do with it, but at the same time I believe lots of people who suffer withdrawal are just drugged and drugged and drugged again until the diagnostic picture is so corrupted that only God knows what's going on.

Your story sounds very much like mine. It's just a matter of when we will be effected, not if. The 'withdrawal' reaper gets all of us sooner or later. There is no get out of jail free card in this deck. Those wishing to invalidate our experiences can niggle endlessly because the scenario will be different for every one of us, but the bottom line remains the same.

 

Yep. Good discussion.

In all honesty, I don't know if I'd classify my case as severe withdrawal or completely overwhelmed by how to reconstruct life.

Curious to hear about people who have lost years to disability and returned to occupational function and independence.

Any withdrawal experience that compromises our quality of life, or when withdrawal is only avoided by the type of slow and careful taper advocated here, is severe.

[UnfoldingSky]

Sorry, asked a question and found the answer in the thread after I posted my question...

[Jemima]

Please note that Werehorse's post, GiaK's reply and my reply have been moved to the Introductions and updates discussion.

[Chrissy]

I would also class myself as suffering a severe withdrawal followed by protracted withdrawal. Now at just over two and a half years drug free I still have alot of symptoms going on. What I will say is that I never had anything like this happen to me before I took prozac. And prozac was my first anti-depressant, which I took for two and a half years, then quit c/t. I have learned that any explanation other than withdrawal can be found to explain away the symptoms by most Dr's, in my experience. They are not interested in the facts, that many people are drugged for most of their lives, often mistaking, and diagnosis from their Dr, any withdrawal symptoms to be a return of original symptoms. Dead people can't talk, and as I found out only too well, this is a path that was always just one breath away for the best part of 2 years.

[alexjuice]

I think we are all candidates for severe withdrawal if we are of a sufficient age, have been on the drugs long enough, have genes that predispose, or have a complicated psychiatric med/withdrawal history.. most times one of these factors is at work. The presence or absence determines when there will be withdrawal. Sigh.. not rocket science.

 

I wonder if there are individuals with complicated histories -- multi-drug, multi-diagnosis -- who quit the psych-med business and did NOT suffer significant withdrawal? I wonder, Gia, if you know of cases like this?

 

Or, another way of asking, are there any individuals with these 'progressing', expanding-diagnoses syndromes taking large doses of many meds and living full-function lives? I've known quite functional patients on more basic protocols. For instance, I myself had my most productive year(s) in 2002-2003 after my psychiatrist got out of rehab and reduced my Rx to AD+benzo.

 

I can't imagine anyone being productive at all on stiff doses of, say : Seroquel, Depakote, Ativan, Buspar & Cymbalta simultaneously.

 

Looking at the above cocktail, imagining the false-starts and changed diagnoses it would surely take to get there, is it safe to assume that once one finds themselves on 'the cocktail' it's either Drugs4Life or withdrawal syndrome of substantial duration? Is it possible to lead a 'normal', healthy life on a drug cocktail like that?

 

Alex

[Barbarannamated]

Alex,

I was quite functional prior to tapering Pristiq (on Vyvanse; trazodone and Klonopin qhs). I wasnt working due to physical injury/disability although my physician cleared me to in recent years. I was active, traveled, etc. I didnt taper the Pristiq because of obvious side effects but because I perceived it to be doing nothing positive but being 'depressogenic' and demotivating. Had I known the house of cards would collapse, I would not have DCd. My best years were late 2008-2010.

 

Not sure if that answers any questions. Just tossing it in. I can't imagine functioning on Seroquel or other sedating drugs you mentioned, but I know some people who do (younger age group). It's hard to say what longterm illnesses or disabilities they may deal with.

 

Good discussion.

[GiaK]

I was relatively functional on massive doses of drugs for a good 15 years (held a job, had relationships, etc)...though my true potential was completely muted...and I felt dead inside...what does it mean to be "functional" ??

 

and yes, I know people who have come off massive doses of drugs and have been relatively okay...(compared to us) but certainly the heavier the drug history the bigger the problems...the thing is there are not that many of us coming off multiple high doses of drugs...most of those people have been brainwashed so thoroughly it never crosses their mind...so we don't have much of a population to observe.

 

I really only know a couple of people with histories as excessive as mine, for example. One recovered remarkably well and quickly (but was gravely ill while coming off) the other took several years and is continuing to improve slowly but is essentially recovered too...

[alexjuice]

It's a good question -- what is functional?

 

I only can conceive it in my own case. Here's what it looked like:

 

The functional me was physically able to sleep, eat, poop and respond to sexual or threatening stimuli appropriately (from a biological perspective). I kept the majority, almost all, of my scheduled commitments (classes, work shifts, social events, etc) and did not regularly doubt my ability to 'suit up and show up'. I could sustain interpersonal relationships, particularly friendships in my case, for lengthy periods.

 

I go back to teen years for this. I didn't have dates. I wasn't a dedicated student. My anxiety/depression type issues were present but fairly minor. I surely wasn't fulfilling my promise.

 

I did not display notable dysfunction however. At age 18 I started a small company and made more money that year than my school-teacher mother. My health and activities were in range of that of a fully functional, though not optimally functioning, person.

 

By age 20, self-reliance for appropriate eating, sleeping, sexfunction, attending obligations, etc. no longer worked. I bought in, believing myself a patient for whom some normal function was lost due to a medical condition.

 

...

Actually a few years later, I dropped several drugs (Zyprexa, Depakote and Trileptal, maybe a couple others - Remeron?) and don't recall feeling badly. I still took an AD and a lot of benzos (6mg klonopin). I turned 23 the semester I returned to college and was 'half-normal' for a couple years. Everything is hazy. But I suppose I am somewhat of a case where I was on a lot of drugs at 19,20,21 and then fewer and became more functional without noticeable w/d. Full time college, part time job, started dating. Of course, also remember poor sexual function, impulse control, some bizarre activities... And maybe that was w/d a bit, my awareness was always impaired so who knows... I definitely got a lot better as my 20s progressed ... Until I got a lot worse after alcohol rehab.... Downslide from there...

 

Interesting that some were able to re-calibrate fairly quickly after stopping a heavy Rx regimen. Makes me sad though, too. Not everyone gets so lucky, as we all know too well.

 

Barb, that's stunning to me that so recently you felt your best. For me, it's obvious in retrospect that I went pretty quickly. My best year was 96 but by 99 I'd gained 90 lbs and rarely left the house but bwtn midnight - 6am. Barb, maybe there's some hope in that for you, that it's not been so long that your health/spirits were okay? I don't know, of course.

 

I guess everyone on here can probably look at their decisions about psych medication with some regret. Really sad, honestly.

[Barbarannamated]

I should clarify... I was RELATIVELY functional in 2009-2011 as compared to 2001 to 2008, the first several years I was on disability for neck injury/chronic pain. I cycled through many meds and had dramatically worsened mood and function after forced retirement in 2001. Some years were worse than others, but 2009-11 better. It's difficult to compare to when I was working full time but in chronic pain (1993-2001).

 

My function now is lower than ever with alot of defeat factoring in.

 

Of course, hindsight is not always 20/20.

[Meimeiquest]

With Zyprexa, I think people are determined by self or dr. To be relapsing and go right back on med. I have a truly nice, caring pdoc. He says he has never seen anything like my W/D...I'm just having a normal one by this site's standards. I was truly "spellbound"... did not think I had any side effects...I just thought I was feeling so good I didn't need it.

[dunerbug]

I'm wondering about this too.

 

 

I think that part of the reason it's not more commonly reported is that folks are led to believe it's a relapse. That, for a lot of people, will mean going back on meds. This becomes a cycle, over and over again.

 

Maybe severe withdrawal is rare....but I personally believe it's not.

[peggy]

i think possibly severe withdrawal that is firstly recognised as 'relapse' and then doesn't remit with either reinstatement or starting another drug must be uncommon - i wouldn't say rare. I n my case, i am quite sensitive to withdrawal, but it has never become protracted, i have always been lucky enough to stabilise back on my dose.